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    SRNA Soundwaves

    SRNA Soundwaves is a podcast network that brings together expert insight, research updates, and experiences from the rare neuroimmune disorder community. Through multiple series, SRNA Soundwaves connects those living with rare neuroimmune disorders, caregivers, clinicians, and researchers with trusted information and meaningful conversations that educate, empower, and inspire. Topics include acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM).

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    Copyright: © TMA

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    Latest Episodes:
    ABCs of NMOSD 304. What is Tolerization? Sep 09, 2022
    Show notes

    Dr. Michael Yeaman and Dr. Terry Smith joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled, “What is Tolerization?" The experts began by giving an overview of immune detection and protection. They explained how immune tolerance is established. The experts provided information on how immune tolerance could be lost during autoimmune disease. Finally, they discussed how immune tolerance can be restored and how these corrections might be applied to treatments and cures for NMOSD and MOGAD. There are visual slides that accompany this episode. The visual presentation can be found at ⁠https://youtu.be/PtYzqrNi6pg


    Ask the Expert 1010. Immunology of Rare Neuroimmune Disorders | Part 3 Aug 29, 2022
    Show notes

    Dr. GG deFiebre of SRNA was joined by Dr. Benjamin Greenberg for an “Ask the Expert” podcast episode titled, “Immunology of Rare Neuroimmune Disorders Part 3.” Dr. Greenberg began by explaining repair versus recovery in the spinal cord, the brain, and the optic nerves. He discussed how the body naturally remakes myelin and current research on astrocytic scars. He also summarized how an MRI may not correlate with how much function returns. Finally, Dr. Greenberg provided information on ongoing research on repair and stem cells, as well as the risks of stem cell clinics.


    Ask the Expert 1009. Air Travel with a Disability | Blind and Guide Dog Travel Aug 26, 2022
    Show notes

    Dr. GG deFiebre of SRNA was joined by Andrea Mitchell of the MOG Project for an “Ask the Expert” podcast on "Air Travel with a Disability: Blind and Guide Dog Travel." Andrea began by providing suggestions on how to prepare for a trip and notify an airline about travel with a guide dog. She detailed how to maneuver through security while never separating from the dog, the rights of passengers who have disabilities through the Air Carrier Access Act (ACAA), and resources available from TSA Cares staff and airlines’ Complaint Resolution Officials (CRO). Finally, Andrea described utilizing relief areas at airports, the process of boarding an airplane, flying with a guide dog, and getting off of an airplane.

    Helpful resources:

    https://www.transportation.gov/airconsumer/passengers-disabilities

    https://www.guidedog.org/GD/caresupport/TravelTips.aspx

    https://www.seeingeye.org/blog/tips_for_traveling_by_air_with_a_guide_dog.html


    Ask the Expert Bonus Track | COVID-19 Vaccines Part VII with Dr. Greenberg Aug 22, 2022
    Show notes

    In Part 7 of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.


    Ask the Expert 1008. An Update on Poliomyelitis Aug 11, 2022
    Show notes

    Dr. GG deFiebre of SRNA was joined by Drs. Amy Rosenfeld, Sarah Hopkins, and Katie Lockwood for an Ask the Expert podcast episode titled “An Update on Poliomyelitis.” The experts began by providing an overview of poliovirus and how it causes poliomyelitis. They also discussed the major symptoms of poliomyelitis, the two types of poliovirus vaccines, and how poliomyelitis differs from acute flaccid myelitis (AFM) and transverse myelitis (TM). Finally, the experts gave general recommendations about these vaccines for people who have neuroimmune disorders or who are on immunosuppression.


    Ask the Expert 1007. Immunology of Rare Neuroimmune Disorders | Part 2 Jul 18, 2022
    Show notes

    Krissy Dilger of SRNA hosted this Ask the Expert podcast on "Immunology of Rare Neuroimmune Disorders Part 2" with experts Dr. Alex Simpson and Dr. Paula Barreras. The experts provided information on how the immune system interacts with the neurological system to cause rare neuroimmune disorders. They described each of these conditions and how different treatments impact the immune system. Finally, the experts talked about long-term issues related to immune-mediated diseases, including relapses, vaccinations, pregnancy and family planning, and genetic components.


    ABCs of NMOSD 303. Long-Term Therapies in NMOSD Jun 21, 2022
    Show notes

    For this “ABCs of NMOSD” podcast titled, "Long-Term Therapies in NMOSD," SRNA's Dr. GG deFiebre was joined by Dr. Dean M. Wingerchuk. Dr. Wingerchuk began by explaining the difference between acute versus long-term treatments and providing an overview of the most common long-term treatments for NMOSD. He then discussed side effects and effectiveness. Finally, Dr. Wingerchuk provided information on factors to consider when someone is considering which long-term treatment to use, including antibody testing, approval from medical insurance, and relapse occurrence.


    Ask the Expert 1006. Immunology of Rare Neuroimmune Disorders | Part 1 Jun 16, 2022
    Show notes

    Dr. GG deFiebre of SRNA was joined by Dr. Philippe-Antoine Bilodeau and Dr. Anastasia Vishnevetsky for the first episode in a four part “Ask the Expert” podcast series on “Immunology of Rare Neuroimmune Disorders.” The experts began by discussing innate and acquired immunity, immune cells, and antibodies. They explained the interrelatedness and interactions between different aspects of the immune system and the nervous system. They also gave a detailed overview of how several medications affect the immune system as treatments and therapies for rare neuroimmune disorders. Finally, the experts discussed how the brain and immune system may or may not change after an injury and the direction of neuroimmunology research.


    Ask the Expert 1005. Community Spotlight | Ben Harris Jun 06, 2022
    Show notes

    The Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ben Harris joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM) as a result of neuroinvasive West Nile virus. They discussed his symptoms and diagnosis, rehabilitation, view of the healthcare system, and philosophy for day-to-day life.


    Ask the Expert 1004. Community Spotlight | Paul Garrett May 21, 2022
    Show notes

    The Community Spotlight edition of the "Ask the Expert" podcast series shares the stories of our community members. For this episode, a Peer Connect volunteer, Paul Garrett, joined Lydia Dubose of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, treatments, rehabilitation, pain management, and life today.


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